The Butterflies by Ala’a Osama
My Journey with Epidermolysis Bullosa
EB is a rare genetic disease for which no cure has been found as of yet. It could change the way you look but it could never change your soul or your spirit. It can destroy your skin but not your spirit.
True, you may lose your hair sometimes but not the smile on your face. Yes, you may be physically different from others but you are mentally the same.
Living with EB has taught me how to be strong and tolerate severe pain. Therefore, it will not stop me from chasing my dreams and it will not affect me as long as I accept it and live with it. As I tell myself always; have faith, be patient, and above all, believe in yourself.
My name is Ala’a Osama. I’m 23 years old and I was born with Epidermolysis Bullosa and this is my story. When I was born, I was a normal-looking child but with one difference. The skin of my right leg was completely peeled off. Believing it to be a birth injury, my parents did not seek further medical advice. However, days later, all my skin started to change, this freaked my parents out, and they panicked, as they did not know what was wrong or what to do with my strange case. All they could do at the time was bandage me up and try to make me as comfortable as possible.
My mother recalled, I cried all the time. My mom took to me to many doctors without success, until finally, one doctor was able to diagnose my case correctly as EB. Unfortunately, he didn’t know anything about the disease beyond diagnosing it, not to talk of managing it or any meaningful prognosis. He actually, could not do anything for us.
As days passed, slowly but surely, with God’s help, I started walking and it was then that the true nature of my condition started manifesting as disasters upon disasters started compounding. For example, as a toddler learning to walk, I fell a lot of times and unfortunately, every time I fell, I lost something, a part of me, something that cannot be regained. Through this stage, I lost my nails, hair and my teeth. Even the normal shape of my hands and feet was twisted. I lost them all.
I slept every night dreading the next morning, the uncertainties and the new horrors that awaits me. I prepared myself every night when I went to bed for the huge amounts of pain that might lie in waiting, for me. The thought of it alone, is horrible and excruciating!
I was born in Sana’a, Yemen with my little family. The weather was good for my skin, however, it did not help my eyes. My family was always there for me, especially my mother, she was my rock. She was my eyes when I couldn’t see and my hands when I couldn’t hold on. Whenever I needed her, she was there.
When you have EB, being careful becomes not just a habit but a must! Things that a normal person would take for granted are always the most challenging for you to execute.
Imagine, using tricks just to move, shift from one place to another, eat or even sneeze.
Imagine always being mindful of how you move, where you step, what to step on, what to eat and how to swallow.
Imagine these simple natural tasks, becoming your constant worries and challenge.
Just imagine the frustration! But, I learned the hard way, the necessity for me to be cautious at all times with no exceptions. As a result, I took the utmost care, believing then, as I do now, that my freedom was tied to my health. However, mistakes still happened, despite my best efforts.
Sleep was a like chore for me, unfortunately, despite my efforts, I couldn’t maintain the same level of caution as I do when I am conscious (awake). Sometimes I could get hurt and bleed due to the peeling of my skin which happened when I scratched myself or made a wrong move in my sleep subconsciously. To make matters worse, the injuries I constantly get from the blistering and peeling of my skin were dangerous, even the smallest ones, because they could lead to infections, and with infections came even more
difficulties.
